On Thursday, 14 March, ITV's This Morning, featured both Hannah Deacon and her son, Alfie. Their discussion shed light on a journey that has not only changed their lives but also spotlighted the potential of medical cannabis in treating severe epilepsy, as well as other conditions including pain.
Alfie suffers from a non-inherited genetic condition known as PCDH19, which led to severe epilepsy. Hannah told This Morning, "Up until he was five, Alfie was practically in hospital every week with severe clusters of seizures, having around 150 big tonic-clonic seizures a week, needing huge amounts pharmaceutical drugs, which actually caused severe side effects, drastically diminishing his quality of life."
Alfie is now approaching four years of being seizure-free, a milestone that once seemed unreachable.
The turning point came in 2017 when the family decided to use medicinal cannabis legally in Holland. "It's just changed his life. His quality of life was hugely diminished. We had to move to another country when he was very seriously ill. We worked with a paediatric neurologist in Holland. We wanted to do everything safely and legally. But it was awful. It was hugely traumatic."
Hannah's interview goes beyond just her family's story, and she highlighted the frustration shared by many families of children diagnosed with severe epilepsy, especially in light of the UK's 2018 law change. Despite this, access to unlicensed cannabis medicines through the NHS remains limited to just three cases. Hannah's fight for access is not just for Alfie but for all children like him, and no parent should be compelled to move countries or resort to unsafe or illegal measures.
"We still campaign to this day for access for children like Alfie because no parent should be forced to move to another country or to do anything illegal or to do anything that isn't safe. We want safe, clinician-led prescribing for children in this country."
